Sam Appley and his mother Mia, who says their local authority ignored professional advice about her son’s needs in favour of a standard ‘autism package’.
Photograph: Linda Nylind for the Guardian

Two years ago, Ben Johnson, then aged nine, suffered a mental breakdown after years of difficulties at home and at school. His mother, Sonia Johnson, says he had deep anxiety and refused to go to school. From the first year of his schooling, she says, she had requested extra support, but the school did not offer the assistance she believed he needed. “I was made to feel I was hysterical and attention-seeking just for asking for support for my son’s needs,” she says.

The crisis brought things to a head. Ben’s GP signed him off. He has not been to school since.

His doctors – a psychiatrist, a paediatrician, a neurologist and his GP – had said he needed extra assistance at school. Ben was on medication for attention deficit hyperactivity disorder and had a diagnosis of autism, as well as paralysis to one side of his body because of a congenital brain problem. The headteacher, though, said Ben did not display enough difficulties to warrant the extra help his mother was calling for. Johnson felt the school’s response was “brutal”. But Ben did not have the vital document from his local authority that would help.

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Since September 2014, the passport to receiving any extra services is no longer the “statement” of special educational needs (SEN) but an education, health and care (EHC) plan, intended to bring together a child’s education, health and social care needs. As under the previous system, pupils are not automatically entitled to be assessed. But now delays in the system are causing extra distress.

The Johnson family’s experience seems all too common. As council budgets and school funding have been cut, families of children with special needs increasingly find they have to battle for help – a fight some do not win.

Anyone can request an assessment, but local authorities can refuse if they believe a required threshold of needs has not been met. And councils are refusing more requests. According to Department for Education figures, there was a 35% increase between 2015 and 2016 in the number of local authority refusals to carry out EHC needs assessments on children. And for those who did get an assessment, in just over 40% of cases, the family had to wait longer than the 20 weeks cut-off date by which a decision whether to approve an EHC plan should be made, as councils struggle to do their job with the funding they have.

Even families who do get a plan still may not be given the services needed. More than 4,000 children in England with an approved EHC plan still receive no provision. The number of children and young people who are waiting more than doubled from 1,710 in 2016 to 4,050 in 2017 – and that figure is more than five times bigger than in 2010.

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In Ben’s case, his mother says she was promised his school would refer him for an EHC plan, but teachers subsequently maintained he was managing. Three years later, in despair at Ben’s worsening physical and mental state, Johnson requested an EHC needs assessment herself. The council refused. She said she would appeal, but agreed to mediation first. As soon as the mediation meeting started, the assessment was agreed. Ben’s EHC plan was finally approved in February, but the document was received by his mother only in July – two years after her application.

Ben now has an out-of-school tutor and his mother says a range of professionals agree he may never be able to return to mainstream education because of all the negative experiences. “It’s been a really tough journey for the family. I feel that hopefully we’ve come over a really large mountain,” says Johnson. “I’m still worried for his future, and desperately sad and angry to see the damage caused.”

Figures from 2015 showed that when families challenged their local authority refusal to grant an EHC plan at a tribunal, 86% of council decisions were overturned. But the strain and cost of preparing a tribunal case mean many families cannot even try. One parent who talked to the Guardian spent £15,000 to employ a barrister, only for her local authority to cave in a week before the hearing. “It seemed a criminal waste of time and money,” she says.

Parents also worry that schools don’t have an incentive to offer enough help because a child with special needs is, bluntly, an expensive line on a headteacher’s spreadsheet. If an EHC plan is granted, schools must meet the first £6,000 cost of any extra support. This comes out of their overall budget.

Adding to the pressures, since the Children and Families Act (2014) local authorities have been landed with effectively limitless liability for SEN: as a matter of equality, because students with SEN need longer to learn, legislation now says they may be entitled to educational support until the age of 25 – five to six years longer than before. Local authorities say they have received no funding for this.

David Ellis, chief executive of National Star College in Gloucestershire, says that when it comes to children over the age of 16, councils are reluctant to pay for specialist provision such as that offered by his college, because of the cost, even when there is nothing suitable locally. This means young people are often forced repeatedly to fail at local colleges that do not meet their needs, he says. “There is a central government solution, which is to recognise that not everyone who needs an EHC plan can have a local solution. There are only three or four high needs students per local authority per year. For those students, you need national centres of excellence.”

Decisions all seem to be about funding, says Barney Angliss, a former local authority commissioner, now an SEN and disability consultant who advises parents. “Councils are wrestling with the cost of everything, and they are saying we simply have to balance the books. … If you talk to parents, they will say we want a decision that is needs-led. If you talk to local authorities, they say they are on their knees because of special needs. It is breaking them. Their core argument is that they don’t get the money from Westminster to be able to do it.”

Richard Watts, chair of the Local Government Association’s children and young people board, says councils have been put in an impossible position. He says the LGA warned the government from the outset that the SEN reforms in the Children and Families Act were significantly underfunded.

The LGA also says mainstream schools are becoming wary of taking children with SEN, even if their needs could reasonably be supported. “If we’re to make sure that all children get access to a mainstream education, the government must urgently provide additional funding,” says Watts.

Mia Appley, whose seven-year-old son, Sam, has autism and problems with speech and communication, says it’s wrong that local authorities are driven by controlling costs rather than what is right for young people. “If you want anything more than the absolute minimum they force you to fight for it.” When her local authority had to cut costs, it withdrew Sam’s language therapy support, Appley says, and was able to do so because at that point he had no EHC plan.

When Sam’s EHC plan came through, within hours of the 20-week deadline, it emerged that professionals’ recommendations for the type of therapies he needed had been ignored in favour of a standard “autism package”. “I had to go to mediation and then apply to tribunal,” says Appley. Her local authority capitulated weeks before the deadline requiring tribunal papers to be lodged.

Over time, the anxiety experienced by parents such as Appley and Johnson is debilitating. “I think what they do is make it so hard that lots of people give up,” says Johnson.

The pressure on budgets is also leading to schools operating “selection by stealth”, says Vic Goddard, principal of Passmores academy in Harlow, Essex. His school takes 53% of children with special needs in Harlow – which has five secondary schools – so his budget is disproportionately hit to the tune of about £370,000 a year. He is proud, he says, that parents choose Passmores, but notes pointedly that none of the other local secondaries “are queuing up to give me the £6,000 they’re not spending by not taking their share”.

Goddard says performance on SEN should be a limiting provision in Ofsted inspections, meaning a school could not be graded outstanding if its share of this group of children on roll was not representative of the need in the community.

The Association of School and College Leaders’ deputy general secretary, Malcolm Trobe, agrees some schools are “not acting ethically and are looking at ways of not taking certain young people because of the pressures they believe they will put on the school”. He says the government has not caught up with the cost implications of there being higher numbers of children with significant needs.

A government consultation specifically about SEN funding closed in March. The results have yet to be published.

Robert Goodwill, the minister for children and families, says the government’s planned new funding formula for schools, due to start in 2018, will deal with the issue. “We recognise the importance of ensuring that schools have the necessary resources to meet the range of special educational needs. Fairer schools funding – backed by £1.3bn of additional investment – will mean protection for those with high needs and will ensure every local authority is in a position to give schools a cash increase through the new formula.”

Meanwhile, though, Goddard says: “As a society we are letting down the parents, and if I’m honest it feels like we’re blaming and punishing them for having a child with special needs.”

The school funding crisis is being felt all over the country, with cutbacks, redundancies and parents being asked to donate cash, pencils and glue sticks. But at one school in south London, teachers have been on the picket lines throughout the year. Is this a taste of things to come?